Operation Sleep Deprivaion: AKA EEG Prep

Monday, June 17, 2013

Whoever said life after the NICU was normal, probably didn't have a micropreemie. 

Alli was not scheduled to see Neurology until September.  After hearing from several families regarding the care they received, we felt led to venture to see a neurologist in Chattanooga.  Vanderbilt was always my first choice because it was well.....Vanderbilt.  But I felt confident and trusted the 3 families I spoke with regarding Chattanooga and felt like God was pulling us to Chatty.    We made an appointment, but it wasn't until November with the waiting list for cancellations being 30-45 patients deep. 
So we looked elsewhere and found a relatively similar timeframe at ETCH, Vanderbilt, Atlanta, Cincinnati, Arkansas Children's, etc.  Both Knoxville and Vanderbilt had openings in September and John and I felt if we had to wait that long, we'd rather go to Vanderbilt. 
Our appointment was made and we waited.  We prayed for the doors to open.  And they did.  We had an angel, an absolute angel, connect us and we'll be heading to Vanderbilt this evening or early in the morning. 
In preparation to find answers, Alli had an EEG last Thursday.  An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors or electrodes are attached to the head and hooked by wires to a computer. The computer records the brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity. 
We had the joy of having a sleep deprived EEG.  Ideally the goal is to go without any sleep after midnight, but for children, they are allowed a maximum of 4 hours.  So we made it a family affair and blew up my Instagram with pictures.

Our big girls made it until 11:00.  Such troopers.  Daddy broke out his famous Key Lime Pie recipe for the event.  I'm not ashamed to say, we ate almost all of it.  You do what you have to do, right??

T-Minus 14 minutes to midnight.  She never fussed, but you could tell she was tired.  After 11:30 she began crawling back towards her room several times, giving us a look like we were crazy for making her stay up.  For those who aren't aware, the tubing attached is how she is fed.

And not a moment too soon.  She made it to 12:15, finding a pillow and waving her white flag.  She was done and we decided not to push her any longer.

And this is the face of 4 a.m.  Happy baby, regardless.  She teaches me so much every.single.day.  Around 5:30 she started to get sleepy so John gave her a bath while I caught up on laundry (ha!  This could be a good routine, but we all like our sleep too much).

Mickey Mouse obviously helped out a great deal as well.
8:30 came and it was time to head to Knoxville.  The car ride was probably my biggest concern.  Once she was strapped in and comfortable I just knew she would fall asleep.  But she didn't, babbling the whole way and of course....still smiling.

Wrapped up like a Mummy, but Mickey still had her back.  Nobody does it for her like that crazy mouse.  Warrior is all I can say.  We were told this would be a sedated EEG, but it was not.  Thankfully, she handled it well without sedation and they were able to get some good info.  We should hopefully have some results tomorrow.

This kid was only able to sleep for 10 minutes through the test.  Basically, just as she fell asleep, it was finished.   We thought she would crash the minute she hit the car seat to go home, but she stayed awake.   It was no time, she was tucked back in her bed and slept soundly the rest of the day.
We believe and pray for wholeness in this little body from the top of her head to the tips of her toes.  Thank you for loving and praying for our girl!

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